Hemophilia of Georgia Hosts Annual State Comprehensive Care Meeting

Nichelle Sims, J.D.
Associate Director, Research and Advocacy

Hemophilia of Georgia hosted the 29th Annual Hemophilia State Comprehensive Care Meeting in March, providing an opportunity for HoG staff and Georgia’s Hemophilia Treatment Centers to discuss new research and ways of improving care for all Georgians living with a bleeding disorder. This two-day session focused on topics ranging from research and policy updates to clinical and therapy services offered to clients, quality improvement initiatives and patient case study analysis.

An interesting presentation on the changing demographics of Georgia, by Audrey Spiegel of the Atlanta Regional Commission, kicked off the first day of the meeting. Georgia’s past, current and future population and growth rates were examined, along with the correlation between age, race distribution across the state and health outcomes, such as life expectancy of the population by counties.

Dr. Kalinda Woods from Emory University followed this presentation with an insightful discussion about the clinical services available to women with bleeding disorders. Dr. Woods explained the prevalence and pathophysiology of common bleeding disorders in women, along with the treatments that can be used to control bleeding symptoms and improve the patient’s quality of life.

Day one concluded with a team building and networking activity that gave all of the different professional disciplines a chance to connect and learn how to collectively better serve the patients and meet their needs within the treatment center setting.

Day two began with updates from Karen Droze, Regional Coordinator for the Southeast Region, on the National Hemophilia Program Coordinating Center’s Quality Improvement Collaborative (QIC). The goal of the QIC is to work with the HTCs to develop improvement teams that support youth, families and young adults in their transition from pediatric to adult health care.

The next presentation focused on physical therapy management of patients with hemophilia across their lifespan. Janet Tankersley from Augusta University expounded on the importance of identifying key impairments, activity limitations and participation restrictions attributed to aging with hemophilia. The group also engaged in a discussion about preventive and wellness interventions for patients with hemophilia, health-related concerns of aging with hemophilia and guidelines for referral to outpatient physical therapy.

Emory nurses Nikki Duncan, Amanda Greene and Betsy Koval spoke about the psychosocial implications of patients with hemophilia and inhibitors. Hemophilia patients with inhibitors can experience several complications that affect their everyday lives including:

• Physical complications, such as permanent joint damage;
• Economic complications, including loss of work or money;
• Developmental complications, such as lack of independence;
• Social complications like loss of school time or social activities; and
• Emotional complications, which may include learned helplessness.

The nurses offered strategies for providing support and encouragement to caregivers and families dealing with these complications daily. Continuing the discussion of inhibitors, Dr. Martin Johnston from Memorial Health University Medical Center in Savannah presented on the deletion of factor VIII gene with additional birth defects and how to manage inhibitor development patients.

The afternoon included group discussions of patient case studies. HoG social worker Christi Humphrey also shared the results of the first organized Hemophilia Treatment Center van transport that took patients from South Georgia to be seen at the Emory HTC by doctors, nurses and social workers. It was a day-long journey for the patients, but they felt it was worth it to receive comprehensive care and treatment. For some patients, it was their first visit to a HTC.

This State Meeting proved to be a productive “meeting of the minds” for improving patient care. Patients can feel comforted knowing that the HTC members are fervently striving to provide high-quality comprehensive care and services to the entire bleeding disorder community in Georgia. With ongoing collaboration among the HTC members, these continual efforts will have a profound impact on the quality of life of people with inherited bleeding disorders across the state.